diffuse large b-cell lymphoma: what it feels like
"i called in sick to work that night and didn't go back for 13 months."
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surviving stage 4 salivary duct cancer
allen chankowsky is a two-time cancer survivor, thanks to his health-care team's willingness to try an unconventional treatment.
dec 28 2022
5 minute read
"without the creativity that was applied to my treatment, i don't believe i would be here today having this conversation," says allen chankowsky.
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beating cancer once is an arduous and all-consuming journey — something that will change the life of anyone who has to walk that path. having to gear up for a second battle is beyond words.
that was the experience of allen chankowsky, who was treated for hodgkin lymphoma in 1991. twenty-five years later, chankowsky would find another lump on his throat — likely a byproduct of the radiation therapy used to treat the original cancer.
although radiation therapy has become more precise and much safer over the years, there is still a small risk that it can lead to a second cancer years after the initial tumour has been dealt with. in chankowsky’s case, the second diagnosis was stage 4 salivary duct carcinoma, an ultra-rare cancer with a five-year survival rate of only 23 per cent .
now, six years after his second diagnosis, chankowsky sat down with healthing to talk about his second battle with cancer, how the unique treatment designed for him at toronto’s princess margaret cancer centre helped him beat the odds, and his new book on what he’s learned from his journey.
what led to your second cancer diagnosis?
in 1991, when i was 21, i was diagnosed with hodgkin lymphoma and treated with radiation therapy. twenty-five years later, in 2016, i was diagnosed with salivary duct carcinoma. despite the radiation therapy giving me 25 years of life, it also caused this second tumour — it was a stage four terminal diagnosis.
how was the second cancer identified?
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i found a lump on my neck. since 1991, [i had been paying attention to] my neck and feeling the lymph nodes. i felt something that was unusual, so i knew enough to get it checked out.
they did a fine needle aspiration of that lymph node. it was confirmed it was malignant, but they didn’t know what type of cancer it was. they referred me to a head and neck surgeon and i had a neck dissection. as awful as that sounds, it’s just a fancy way of describing surgery that takes a look at and removes cancer in the neck area. once they examined the tissue, i was diagnosed with salivary duct carcinoma, an ultra-rare cancer. i say ultra-rare because it affects less than three people per 100,000.
what went through your mind when you’ve already beat cancer once and now you have a second diagnosis?
well, a couple of things. first of all, i was kind of half expecting this, so it was like, i guess i made it to the point of my life where i’m now going to have to navigate a second cancer experience .
having said that, it is still a shock to the system — particularly when you’re told that the stage of your cancer is to a point where it’s labelled as terminal. it was particularly difficult because i had kids at the ages of nine and 12 at the time. it was very, very difficult.
was there treatment beyond the surgery?
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it was recommended that i try more radiation therapy to the head and neck — twice per day for a month. the cancer had already migrated to my lungs, and it was clear that it was a terminal situation. i was referred to the palliative services at the princess margaret hospital. my partner, cynthia, and i had two choices to make: we could either accepted the palliative chemotherapy that was being offered, or we could embark on a research project with the hospital. we decided on the second choice.
we had learned about some interesting and, in some cases, very effective treatments that some people with my type of cancer type from various corners of the world were benefiting from. one was an approach called androgen deprivation therapy. the reason why we decided to try it was because the receptor that was identified in my tumour was called an androgen receptor — meaning that my tumour needed androgens to fuel its growth. [the question was] what happens if we starve the tumour of those androgens, similar to what is done with prostate cancer patients? so we brought that information to my oncologist — i had nothing to lose at that point.
so there i was, the head and neck cancer patient sitting in the prostate cancer clinic waiting for my injection.
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without that creativity applied to my treatment, i don’t believe that i would be here today having this conversation.
it takes a lot of strength to get this type of diagnosis and then decide on a new approach that not many people had tried.
it is amazing what the human spirit can do when you’re forced into a corner. it’s a major part of the will to survive. i realized that it wasn’t like it was in the ’90s, where all i had was access to a doctor and an encyclopedia that was printed 12 years earlier. information is readily available now. my oncologist at princess margaret, cynthia and i looked through all the options and we came up with a solution that’s not written in any textbook.
precision matters now. my oncologist had the insight to recommend that my tumour be genetically sequenced, and it was that decision to genetically sequence my tumour that ultimately led to our treatment decision.
through all of this, how was your family?
at the time, we didn’t talk about it. we didn’t talk about how my chance of surviving five years was 20 per cent. under the weight of that statistic, it was very difficult for me to shake off the negativity. i worked very closely with the psychosocial department at princess margaret. the emotional component of dealing with cancer, in my case at least, was probably three-quarters of the problem. the other 25 per cent, the physical side, was easier for me to deal with. [the thought of] having to say goodbye to my kids at those tender ages and having to say goodbye to my parents was awful.
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now, life is great. i was able to attend my son’s graduation from high school this past june, and watched my daughter perform in several theatre performances. if you told me in 2016 that i would have been able to do any of that, i would have thought that was crazy.
there’s a huge emotional impact that cancer has, regardless of whether the cancer is designated as terminal or not. if it weren’t for the emotional support i received from princess margaret, i don’t believe i would have been able to embark on the writing of my book. and i would not have been able to come forward as liberally as i have with my story. i was extremely private — to a fault. i was reclusive. i distanced myself from relationships and i just wasn’t able to come to terms with what was happening with me.
the emotional support that i received was just as life-changing as my physical survival.
readers interested in learning more can check out the princess margaret art of conquering cancer campaign and the canadian cancer society.
emma jones is a multimedia editor with healthing. you can reach her at emjones@postmedia.com or on instagram and twitter @jonesyjourn.
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